In the second episode of a two-part SSA podcast on autism and addiction, Rob Calder talks to colleagues from the Substance use, Alcohol and Behavioural Addictions in Autism (SABAA) project about personalising treatment, the gaps in the literature about autism and addiction, and the implications for research and policy. [23 minutes]

The podcast begins with a discussion about what good addiction treatment looks like for autistic people, which includes ensuring that services are more accessible in general to a group of people who may otherwise feel excluded, and ensuring that services are flexible enough to be personalised to meet an individual’s needs.

Chris Torry is autistic and has worked in addiction treatment services for many years. He refers to the need to pursue ‘universal design principles’, which emphasise accessibility, usability, and inclusiveness. “Calm environments and a range of treatment options, that suit different people, benefit everybody. It’s not about dismantling services and then rearranging them to only suit a group of people. It’s about good universal design principles.”

Julia Sinclair is Professor of Addiction Psychiatry in the Faculty of Medicine at the University of Southampton, and honorary consultant in alcohol liaison at University Hospital Southampton. She talks about the benefits of personalised medicine, and indicates that cultivating better treatment for autistic people in this way will produce benefits that ripple out to the wider treatment population.

“If we’re talking about personalised medicine, which we know gives people better outcomes, we need to be matching the treatment and the therapy module to what people’s needs are. If that means that somebody comes in who requires face-to-face or single one-on-one therapy, then that’s what we need to deliver – as opposed to saying, ‘all you’re going to be offered is group therapy’. And actually, things that are autism-friendly will also be good quality for other people.”

Janine Robinson is a Consultant Clinical Psychologist and a specialist in the field of autism in adults. She gives some examples of how services could be tailored to meet people’s needs. For instance, she says that some assessments forms and types of treatment typically involve asking people to answer questions using a rating scale (e.g. ‘On a scale of 1 to 10…’). This may not be suitable or useful for everyone, so services could think about alternatives (e.g. asking people to choose colours instead of numbers). “With cognitive behavioural therapy you need to rate things, and some [autistic] people say to me ‘I don’t like rating things, I prefer having colour. Blue means this, yellow means that.’”

The podcast then moves on to the work of the SABAA project to identify gaps in research, policy, and practice. When there are so many gaps, and everything is important, the challenge for the SABAA team has been: ‘how do you identify what is most important, in order to make progress against these areas?’

Sam Chamberlain is Professor of Psychiatry at the University of Southampton, and Honorary Consultant Psychiatrist at Southern Health NHS Foundation Trust. He describes the process they used to identify those priorities. “We conducted a Delphi process, which is where we bring together a group of experts, including people with lived experience. The aim was to identify the top priorities – the things that need to be addressed, that we don’t yet know the answer to – in three domains: research, policy, and practice.”

Finally, Rob asks them about their hopes for the next five to ten years, which generated ideas and aspirations for the future (e.g. autism and neurodiversity being part of the training people receive in substance use treatment services), as well as reflections on the positive outcomes to date of the SABAA project – a key one being that the co-production central to SABAA has helped to break down the barriers between people’s professional lives and their personal lived experience of addiction and autism.

Editorial note: Following the lead of the SABAA project this article uses identity-first language, but acknowledges that there is no universally-accepted way to describe autism.

[Part one of the interview can be found at this link]